So grateful for medicines and supplements/vitamins and What are your worst types of pain?

Uhura

Active member
Joined
Mar 20, 2021
Messages
40
Reason
DX FIBRO
Diagnosis
01/2007
Country
US
I know they don't take away all the pain. And I know that I will probably always wish someone could explain why some days I can do a lot and be much better than other days where I do much less, yet still have pain. For me the nerve pain that feels like someone is sticking a lot of hot pins and needles in me and leaving them in as well as taking hot sandpaper and rubbing me. Lyrica helps a lot with that but I still feel it at times. I especially get that in my upper arms on days when I have used my arms a lot. (not diabetic, which is a common question I get). and what I think are migraines are another of the worst type of pain. I wish that if we are stuck with chronic pain diseases, at least everyone would respond to medicines instead of them doing nothing for some people or causing more severe side effects for other people. My worst fibromyalgia symptoms are the migraines, eye problems (stinging and dry), nerve pain from repetitive use of arms, and other pains that fall under being annoying only because they are milder than the more severe pains.
 

Jemima

Very helpful member
Joined
Jul 30, 2020
Messages
508
Reason
DX FIBRO
Diagnosis
11/2019
Country
PT
I wish that if we are stuck with chronic pain diseases, at least everyone would respond to medicines instead of them doing nothing for some people or causing more severe side effects for other people.
Hi Uhura,

Wow, I wish this too!

My worst pains are the feelings I get in my joints when I get a really bad flare. The only way I can describe it is that someone's taken some fat rusty rebar and hammered it through each joint. I get muscle pain too like being bruised all over, costochondritis, a kind of zapping sensation that moves up my limbs, my neck locks up, eye pain and some headaches - but I've always been lucky that the headaches aren't so bad. I think all of you who deal with migraines are total warriors because they are horrendous!

Medicines so far have never agreed with me, but some supplements have helped. Isn't it crazy how different we all are? And yet, we've all got enough in common to get what each other are going through on some level.
 

Uhura

Active member
Joined
Mar 20, 2021
Messages
40
Reason
DX FIBRO
Diagnosis
01/2007
Country
US
I take a lot of supplements but can't say specifically which ones help with what because I take several for general health. Which ones do you take?
 

Jemima

Very helpful member
Joined
Jul 30, 2020
Messages
508
Reason
DX FIBRO
Diagnosis
11/2019
Country
PT
I'm kind of the same, in the sense that I've been dealing with mental health issue a lot longer than fibro, and a lot of my supplements target that too. I have taken waaaay more supplements over the past couple of years, but I've gradually narrowed it down to what I believe is actually helping.

I take CoQ10 and alpha lipoic acid for mitochondrial support - I feel that this has helped my brain fog quite a bit
I take low-dose lithium orotate for depression
I take magnesium glycinate for anxiety/insomnia/fibro pain - it's a multi-talent!
I take boswellia for joint pain/a general feeling of inflammation and puffiness

Can't say exactly what's doing what - all of these supplements are indicated as potentially useful for fibro sufferers. Between them all and a lot of lifestyle changes, I'm doing much, much better in all areas of fibro symptoms than I was when I first started trying to put this puzzle together. The next experiment on my list is GABA - it's ordered, so I'll report back on how I get on!

I wish I could suggest something epic for your eyes - that really sounds like the worst :( especially combined with migraines. You are so strong, dealing with all of that!
 

Uhura

Active member
Joined
Mar 20, 2021
Messages
40
Reason
DX FIBRO
Diagnosis
01/2007
Country
US
I don't feel all that strong. But you do what you have to do. I am grateful for Excedrin Migraine pills.
 

aclarkwhitman

New member
Joined
Jul 24, 2021
Messages
9
Reason
DX FIBRO
Diagnosis
04/2014
Country
US
State
GA
Hi Uhura! I was diagnosed in 2014, and was almost bedridden. The doctor started me on Cymbalta, Xanax, and some pain pills. The Cymbalta was life changing, but the side effects to begin with were awful. My pain is mainly in my back, hands, knees, and of course, migraines (ugh). Sometimes I can barely stand for my clothes or a blanket to touch me. My dog has sniffed me and me feel like I was being stabbed. That comes and goes. I have the tingling in my hands and feet plus numbness around my mouth sometimes. Turmeric has helped a lot with my hands. I’m able to move them in the mornings now. I do a multi vitamin, turmeric, vitamin c, b12, fish oil, CoQ10 and melatonin at night as far as supplements. I take two doses of Cymbalta and two doses of klonopin. The klonopin has really helped with anxiety (went through a period when I wouldn’t leave the house). I try to good with my diet, but I’m not consistent. When I eat well I do feel better. Right now, other than the migraines, I’m in pretty good shape. My doctor prescribed Maxalt for my migraines. It does help more than any other migraine medicine I’ve taken.
 

Uhura

Active member
Joined
Mar 20, 2021
Messages
40
Reason
DX FIBRO
Diagnosis
01/2007
Country
US
I use Systane gel drops. They are the only Systane that helps me. The others are too liquid and just roll off my eyes. As well as Genteal Tears ointment. And wet wash cloths on my eyes. Grateful for anything that offers even a little relief. Glad you have had good luck with one of them. Amazing how different the Systane things are. I know many people say to only use the individual use ones and nothing from a bottle. Individual use drops don't work for me.
 

Carolyn Rhodes

Active member
Joined
Nov 27, 2019
Messages
43
Reason
DX FIBRO
Diagnosis
07/2017
Country
US
State
VA
Hi Uhura,
I have tingling and numbness in hands and feet, every once in a while my skin gets so sensitive that I have to wear baggy clothes. It feels like bugs are crawling... Knees and elbows give me a fit. I to have the stinging, dry eyes. I will have to try the Systane. I take mostly supplements as well. I do take Nortriptyline but the supplements I take daily are:
Complex B vitamin
Magnesium
CBD capsule
Fish oil
D3
Turmeric
Vitamin C
I don't know if they really work, but I think we all are willing to do things to eliminate some pain.
 

Cindy Wood

Active member
Joined
Sep 23, 2021
Messages
41
I too suffer from the migraines almost on a daily basis sometimes, my joints burn, and my muscles ache I too think Lyrica is a good medicine. I hop someday they can come up with something that will help the chronic pain thats the worst. To everyone I think we are all warriors suffering from the many symptoms and making it through the day it may have not been a good day but we made it and thats a good thing god bless all of you .
 

Uhura

Active member
Joined
Mar 20, 2021
Messages
40
Reason
DX FIBRO
Diagnosis
01/2007
Country
US
One day at a time.

And don't give up hope. I believe in the next life we will all have perfect health.
 

JayCS

Very helpful member
Joined
Sep 5, 2020
Messages
654
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
Some of my worst kinds of pain were inflicted by docs 🤯, e.g. spinal tap, hyaluronic jabs near my spine, and - strangely - acupuncture.
I do still have some pains, altho most are under control now, and my acupressure/physio can be very painful too, with deep relief immediately after. But actually I don't think about it and am having trouble recalling - which is good, I guess.
My general Ache is what debilitates me most, stops me from doing much, whilst single pains usually don't.

Like others I'm personally not grateful for medicines as they caused pain and didn't help, and generally suppress symptoms instead of alleviating or curing. But it's good they exist of course, life-savers for a time. As long as they're not hiding alternatives....
After all the normal, "general health" supps not helping last year, and melatonin and CBD oil putting me on a month of sick leave in March, dabbling on the outskirts since April has been very successful: GABA has put me on a winning streak since then; glutamic acid, ashwagandha, 5-HTP, tryptophan harmed once again; now I'm re-adjusting glutamine & rose root, still revisiting Mg malate & glycinate, after revisiting tryptophan in self-encapsulated smaller doses failed; my new ones: mumijo, NAC, P5P (B6-type), D-Ribose, SAMe, serrapeptase, revisiting melatonin in <0.1mg=1mcg specks, next/last up: NADH/+, ALC; my favourites remain GABA, theanine & passiflora. My target is zero sfx and (apart from D3 and omega 3) noticeable fx, as I am definitely not a supp nut. To keep it short: all of these have some slight research evidence to help with sleep and/or FM/CFS (Ache, pain, energy, fatigue, inflammation, stiffness). SAMe is the first one to fail (for the time being), due to seeming high sfx for me. I'm increasing the others and today I tested NAC, both magnesiums, Ribose, and serrapeptase on a bike trip (hilly 25-30 miles, 5.5h incl. breaks), taking most every 1.5h with seeming success... 🧐😊 - I'm not too keen on moving much more today, but I could. What tomorrow brings will not directly be a flare, it'll be sore muscles not being used to such a long exertion.... And if that ends in a flare, I'll try more of the same.... (but not SAMe ;-).)
 
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